From Regional Patient Advocate Javier Santana
Like many countries around the world, the Central American and Caribbean region has also been affected by the COVID-19 pandemic. This has allowed many governments to enact lockdown and establish new regulations to avoid contagion. We have not received information on HAE patients in the region who have been reported infected. Our group leaders and HAE International continue to work together in the effort to achieve a better quality of life for HAE patients in the region in the future.
As part of the efforts made, I held a Zoom meeting with all the member organizations in my region so that they could meet, maybe see each other’s faces for the first time, and share ideas and strategies that they have used in their respective countries. For several hours, the participants were able to talk about their experiences with HAE, their experiences with the lack of medicines, what efforts they have made in their respective countries, and how they could support each other as neighboring countries. As a representative of HAE International, I made a commitment with them to continue holding Zoom meetings in order to offer them workshops and guidance on how to work in their countries.